I have volunteered with WPI for many years now. There are many different times during the year to help. Whether it's asking others to donate, advocate on a patients behalf, or help get auction items for the annual I Hope You Dance event, they always appreciate the help. WPI is trying to find answers for my family members who suffer from neuro-immune disease. I am grateful to give back anyway I can as they give so much to me. This place gives me hope. That is a wonderful gift to give and receive.

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Since the firing of Dr. Mikovits the Whittemore Peterson Institute no longer has a retrovirologist on staff. Other remaining staff members are not qualified to carry out the research.

Since the firing of Dr. Mikovits the Whittemore Peterson Institute has neglected to answer numerous questions to the satisfaction of patients, donors, supporters, and the general public. The closing of the Whittemore Peterson Institute's facebook page has served to further severely restrict patient inquiry and two way communication. This lack of transparency is disrespectful and unacceptable.

I have changed from an ardent supporter to no longer supporting the wpi.

The Whittemore Peterson Institute carries out research into Neuro-immune disease and will soon open a clinic to serve patients. People with neuro-immune diseases such as myalgic encephalomyelitis ("CFS"), fibromyalgia, atypical MS and autism have long been ignored or poorly served by medical and research institutions.

I have an MS from Cornell University and an MA from the University of East Anglia in the UK. Contracting ME while working in East Africa in 2007, my career was brought to a sudden halt. I now have hope for recovery thanks to the work of the WPI. Like many other patients, I support them with a small monthly donation. However much larger contributions are needed if research is to continue, and for the clinic to serve the approximately one million + patients in the US with neuro-immune disease.

The Great!

I've personally experienced the results of this organization in...

The WPI provides on-going support and information to patients via their website and their presence on Facebook. They give us all hope.

Ways to make it better...

If I had to make changes to this organization, I would...

I would request that large funding bodies, including the government, provide funding for research into neuro-immune disease.

ME/CFS is a life sentence to a living death. It can be extremely debilitating and torturous and can go on for decades before one has an early demise due to the resulting organ failure. It has robbed so many good people of their lives. It affects children, adults and people of all races, ages, and gender. It is estimated to affect at least 1 million people in the US, which makes it more prevalent (and often more debilitating) than HIV/AIDS. The economic loss of productivity is estimated to be over 10 billion dollars annually. People with ME/CFS are scoffed, ridiculed, and at the very least, not believed. This prevailing attitude permeates society, the medical profession, and our government health agencies. Finally after 25+ years of this abuse, lack of research, and being left for dead, we have the beginning of the first ever translational research/treatment facility. The WPI is a beacon of hope. Not just because they have chosen to take on a very unpopular and politicized health crisis, but also because they are motivated by compassion and all the right reasons. They are truly a light in the darkness.

The Great!

I've personally experienced the results of this organization in...

Following all the news on ME/CFS for 17 years now. Also being intimately involved as a patient.

Ways to make it better...

If I had to make changes to this organization, I would...

Nothing needs to be changed with the organization. Rather the world, and especially our government health agencies need o recognize, respect, and fund their work.

Previously in excellent health, I was diagnosed in UK with myalgic encephalomyeltis (aka chronic fatigue syndrome) in 1992, was told there was no treatment for it and that it would work its way out of my system in about a year. 19 years later I still have ME and there is still no treatment for it. I had to give up work due to the level of disabilty it caused, as it affects almost every organ and system in the body. It is a most insidious disease with devasting effects on health, life-style and livelihood. ME is indiscriminate - anyone can get it, including children as young as 2 years of age. It is heartbreaking that children and young people lose their lives to this disease yet no public funding is provided for biomedical research to find root cause and treatment. I totally trust the dedication and integrity of Whittemore Peterson Institute - their only vested interest is in finding cure(s) for neuro-immune disease. It was set up because the founders' daughter has ME so what better motivation could an organisation have to persevere and succeed? WPI has my full support and gratitude for giving millions world-wide hope for a cure at long last, through its ground-breaking research and now moving on to translational research with the prospect of treatment if it can get the necessary funding.

The Great!

I've personally experienced the results of this organization in...

I monitor the developments in WPI's research and will glady take part as a test subject if required. I believe that WPI is our best hope for a cure for ME and other neuro-immune diseases.

Ways to make it better...

If I had to make changes to this organization, I would...

have them receive government funding for their work. The biomedical research they are doing is so long-awaited - for decades now - by so many in US and around the world.

I've been a ME patient for over 23 years and there was no one that could help me. Since the foundation of the WPI I can have hope again to get back my life...because they are the only ones that really care for patients with neuro-immune diseases and prepared to work very hard to help each and every one of them. I'm from the Netherlands and there's no hope at all for us in not ONE country in Europe.....words will never be enough to express my gratitude to the Whittemore Peterson Institute and everybody that works or helps there!!

The Great!

I've personally experienced the results of this organization in...

My contacts with them - they take all the time and efforts needed to help you and don't even forget husbands/wifes and children!

Ways to make it better...

If I had to make changes to this organization, I would...

Not change ONE thing - I only wish I could donate more money, because I'm sure they can use it to do more research thereby helping millions of people worldwide!!

Other organizations, especially those who deal with chronic illnesses, should take note. WPI gives us something we have never had before: HOPE.
May God bless each and every one of you.
Thank you for all you do.

The Great!

I've personally experienced the results of this organization in...

The WPI has helped educate me, and everyone who reads their updates, and the all of the information they provide to those of us who suffer from ME.
Never in history (that I am aware of) have patients had to do their own research, and learn as much as we have to learn about the disease we suffer from. Many of us know more about it than our doctors. The WPI is an invaluable resource.

When no one else would do the hard work to help all those afflicted with ME/CFS, this organization decided to tackle the illusive answers. They have been dedicated to helping the sufferers find relief from a life stealing illness even when some in the scientific community did not back their hard work. They have persevered with more science and more research, and are doing incredible work toward helping millions! I am very grateful for these goals and WPI's steadfast dedication.

The Great!

I've personally experienced the results of this organization in...

benefiting from the results of life changing research into the immune system and viral activation, expanding the knowledge base of physicians and researchers worldwide.

Ways to make it better...

If I had to make changes to this organization, I would...

Give them more money so they had more resources to continue and expand the work they do.

I love volunteering with this organization . These are the kindest hardest working people I know. They are so helpful and thankful for anything you can do. They personally write , call and interact with as many people as they can. They receive 100's of emails Amd phonecalls and one person I watched listened to a patient for 30 minutes who literally said she had no one else to talk to. I've volunteered before but WPI makes you feel at home.

The Great!

I've personally experienced the results of this organization in...

Watching how they interact with friends , family and with very sick individuals. I've watched their event from the very beginning . I've watched how they've interacted through social media sites and do the very best they can.

Ways to make it better...

If I had to make changes to this organization, I would...

Give them more money for imperative research and clinic. hire more staff they have so few people to do such an amazing large job! Their budget is way too small for what an impact they have made worldwide!!!

Most research organizations exclude severely ill CFS patients from their studies, by making participation difficult for patients who are unable to leave their homes or their beds to donate specimens. The WPI includes these patients by sending phlebotomists into the homes to collect the specimens. The WPI understands that CFS is not caused by "false illness beliefs."

The Great!

I've personally experienced the results of this organization in...

I’ve personally experienced the hope engendered by this organization, which takes the disease seriously and is fighting to find a treatment.

Ways to make it better...

If I had to make changes to this organization, I would...

This is the best organization in the history of this disease--the sort of organization I dreamed about for years.